Talking about HIV and U=U in Russian

Bob Leahy interviews the Switzerland HIV non-profit organization director Dr. Alex Schneider, an expert on the troubling HIV epidemic in Russia, the largest in the world

Bob Leahy: Hi Alex, thank you for agreeing to talk to PositiveLite.com. Tell me a little about yourself. You live in Switzerland?

Alex Schneider: Yes, I have lived in Switzerland for three years, not far from Zurich. I live here because of my husband and his job. I moved here from Germany. Before that I lived in Russia and USSR (the Ukraine). I’m 38 years old. I’ve been HIV-positive for five-six years and I’m undetectable.

How would you describe your profession, because I know you have done a lot of things?

Yes, first of all, I’m still a chemist, a bio-chemist. I’m also a scientist so that really helps me do work around HIV services. Now, though, I’m also an HIV activist and an LGBT activist.

And you have done some work with the Russian government, have you not, to establish their HIV policies?

I had an organization in Germany; we did work for different governments about health systems. In 2011 I founded a non-profit organization in Moscow for this purpose. The HIV problem in Russia is really big so I started to work with the government on a new strategy to fight HIV and to make broader access to treatment.

Let’s talk about the HIV epidemic in Russia because I don’t know as much about it as I should.

Measured in new cases, per year, Russia is first place in the world (2016 - 103 000 new cases). Drug users account for 49%, men who have sex with men (MSM) are at 1.5%; the rest are as a result of heterosexual sex. In the first half of 2017, there were 14,631 deaths of HIV positive people. There are 1.16 million registered HIV cases in Russia today including 259,156 deaths. It’s estimated that 24% of drug users are HIV-positive, 14-15% of MSM and 12% of sex workers.

Those are worrying numbers. How does Russia stack up to 90-90-90 targets?

In Russia today the numbers are at 64-33-75. (64% of people living with HIV are diagnosed, of those 33% are on treatment and of those 75% are undetectable.)

Now you have been successful in signing up a huge number of new community partners in Russia and EECA to the Undetectable = Untransmittable (U=U) campaign. I’m guessing you have used your connections made in Russia to do that?

I know many of the organizations and have colleagues who work in these organizations. I called them and said “you need to sign on”. I was calling, calling, calling. We had taken information from your (U=U) website, added a little bit more and translated it for our site. Now we have even Armenian. Some organizations said “we know about that Information” (U=U). I said “it’s good that you know, but you have to spread this information, to talk, to educate other people.”

So they knew about U=U already?

If we are talking about HIV service organizations - I can say that they mostly knew. Some people said “but you don’t understand, we have this problem here in Russia with treatment, with access” and of course I had to explain it’s not just me saying it, even UNAIDS is saying it. I say “you have to fight the stigma.” Only by fighting stigma can we fight HIV. Of course, being stigma-free in our society is impossible. But people need to understand that if people have an HIV positive test, this is not a death sentence, they need to get treatment and live life to the fullest. …many people (in Russia it is more than 20%) who are tested HIV-positive never go back to the clinic because they are afraid.

What about access to treatment. Once you are engaged in care there is that an issue?

It’s a big problem. Only about 33% of people who know their status get on treatment. (In Germany it’s over 90 %.) It’s improving though. The government pays for the treatment, for prevention, for everything, but still not enough and not effectively.

Supposing I was diagnosed there today would I be able to start treatment immediately?

No. It depends on the city and the AIDS Centre. In some cities it goes faster. in some not so. Usually you will be diagnosed, then will have your conversation with a doctor (“infectionist”), then you need to have a medical examination by other doctors like cardiologists, even a dentist; only after that you may get your treatment. It may take two-three months or more. In some cases (it used to be many cases), and if they don’t have enough medicines because of small budgets etc.- say you have a CD4 of 400 - they will say “let’s see and wait one year.”

Is viral load testing available without a problem?

So so, but usually yes. But we have a lot of deaths because people are coming to the clinic to get tested too late, with very low CD4’s. In the first half of 2107, we had about 80 deaths a day, and it’s because of late diagnosis.

That’s not good. I see that only 1.5% of cases, by the way, are MSM. Do you believe that last number?

I mean it’s not true. In Russia if you are gay, it’s better to say “I got HIV from a woman.” In Russia one of our partners started a campaign called “code 103”. It’s the special code used by a clinic for MSM infections. If you are homosexual you should be saying you got sex from a man, if that’s true, to get proper statistics. Gay sex is not illegal but the stigma is still there.

So is there HIV prevention aimed at gay men, or organizations for gay men?

There are some organizations, but their funding is mostly not from the government but from foundations, like the Elton John AIDS Foundation. etc. When you talk to the minister of health in Russia you may say “we need to do HIV prevention work for MSM.” But with just that (false) 1.5% figure, the question we are asked is “why?”

Let’s look at the prevention alternatives then. What’s the role of PrEP in Russia? Anything going on?

We are starting to think about and start a campaign in the new year aimed at MSM. I’ve been talking with generic drug companies from India to get the drug really cheaply. People would pay about $40 a month. Our partner “Phoenix Plus” has already made available oral HIV tests with help from the Elton John AIDS Foundation.

This is good, Alex I’ve learned a lot from you. You’ve been very helpful. Thank you for teaching us about the epidemic in Russia, how serious it is, and what is being done to combat it.

Thank you Bob.

About Alex Schneider: “For more than 20 years I have been involved in scientific work in the field of chemistry, biochemistry and pharmacy. For the last 10 years I focused my activities on socially significant diseases such as HIV, hepatitis C and tuberculosis. In 2010 I started a collaboration with the EECA region. One year later I was diagnosed HIV-positive and decided to work in advocacy in the EECA region. In 2015 I initiated a discussion about compulsory license in Russia under government level with prime minster Medvedev. In 2015-2016 I began to work on a strategy to combat the spread of HIV in the Russian Federation during my expert work at the Russian parliament. In 2016 I developed an app for HIV-positive people called Life4me+.

About the Author

Award-winning blogger Bob Leahy first made his social media mark a decade ago on LiveJournal.com where there are still to this day almost 3,000 entries of his available to be read. He was a featured blogger on Ontario’s HIVStigma.com campaign, along with PositiveLite.com founder Brian Finch. He joined PositiveLite.com at its inception in 2009 and became it's Editor a year later.

Born in the UK, Bob’s background is in corporate banking, which he gladly left in 1994, after being diagnosed with HIV the previous year. He has chaired the board of PARN (Peterborough AIDS Resource Network) and has been an executive board member of both the Ontario HIV Treatment Network (OHTN) and the Canadian AIDS Society (CAS). He was inducted in to the Ontario AIDS Network’s Honour Roll in 2005. Bob is currently a member of Ontario’s GMSH (Gay Men’s Sexual Health Alliance). He also writes for TheBody.com.

In 2012, Bob was honoured with the Queen Elizabeth II Diamond Jubilee medal for his work and commitment to HIV/AIDS in Canada.

Bob continues to write for this site while in the Positivelite.Com editor’s seat, with a particular interest in HIV prevention, theatre and the arts in general. He is accredited media for a number of Toronto theatres. He lives in Warkworth, Ontario with his partner of thirty-two years and three dogs.